I feel like I continually write about the challenges of chronic illness. It’s often hard to see passed all the pain. How is it possible to be happy when your body is betraying you? It can be hard to celebrate any type of “win”. What normal person celebrates getting out of the house or taking a shower. Those are just things any regular person does. It’s easy, right? For you or me those are wins. That means we conquered something even if it causes pain later. We did something for us.
I’m determined to focus on good. It’s the only way to get through all the ups and downs. Between Lupus and Ehlers Danlos I often get lost in the harsh symptoms. I forget to celebrate the wins even if they’re tiny. I am elated to say, after detailing my concerns with my doctor and adjusting my medications, my hair is not falling out in clumps anymore!!! Happy is the only word that can describe how I feel.
It’s been about three years of my hair falling out. I, at first thought, it was due to me giving birth. It happened with my two boys, as time went on the amount of hair became alarming. I thought wow, this is happening for an extended amount of time. I reasoned it was because I was older or maybe my hormones were different because I had a baby girl. Silly right?
I know now I was naive in thinking that. I see things so differently in hindsight. There were other symptoms that I didn’t recognize, I had extremly high levels of anxiety ( didn’t know it was anxiety) and again thought hormones, because I breastfed for eighteen months (yes, 1.5 years). In my mind there had to be an explanation for everything. I couldn’t go in the sun because I had sensitive skin. I was tired because I was a stay at home Mom of three plus I wasn’t as young as when I had my first two. I really had a reason for everything.
It made so much sense to me at time. I realize I was kidding myself. I didn’t give myself time to recognize there was stuff going on beyond my control. I needed help.
As my diseases progressed other symptoms creeped in. I had a A HA! moment at one of my doctors appointments. All this “stuff”, even way back when, was due to my diseases/ syndromes progressing. I was so clueless of all the symptoms being linked or how much it could rule my world.
In a odd way I was relieved.
Ummm so, I’m not crazy!? I actually have REAL things going on. Talk about a sigh of relief met with a gasp of oh my this is going to be forever??
It’s been challenging. There hasn’t been a day that Lupus, Ehlers Danlos, or the unpleasant symptoms that come with them hasn’t affected me.
However, I feel like I’ve had a small victory. I have to celebrate the ones I get.
I got my hair back! Well, not all the way but it’s looking a heck of a lot better. When I shower I’m no longer afraid of seeing handfuls of hair. Honestly, barely any falls out!
It’s seriously feels like some kind of miracle!
I am new at this. I’ve had health issues since my daughter was born but went undiagnosed. The journey has been long and tidious. Finally being diagnosed has been life changing. My diseases/ syndromes are getting under control and I feel like I’m getting part of my life back.
I know I’ll never be where I was, although it is the goal. I’m living a new normal and I’m thankful for the passion it has brought to me. All my fellow spoonies I’ve met is one of my biggest blessings through this. I’m not alone. There are people that understand. I can’t thank you enough.
What’s the point of the post? Simple. Believe it’ll get better.
Let’s appreciate today, yesterday, and tomorrow. It’s another day to fight and figure out how we can help ourselves. My small win is my hair. Yours could be anything, from getting out of bed or talking with a friend . We have to appreciate what we conquer, know a win is a win, and face our challenges with hope and determination.
It’s possible. It has to be.
••If you’re dealing with the same issues please don’t hesitate to message me. I am active on Twitter @_crazywonderful or you can email me. I will tell you what my doctor prescribed and maybe it will work for you.••
*** wrote freehand with limited edits, please be kind, thank you***